Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Join us October 17 for our Webinar: Beyond Treatment: Getting the Follow Up Care You Need Register here.
New Feature: Fill out your Profile to share more about you. Learn more...

Older Woman HRT

crik
crik Member Posts: 2

I am looking to connect with similar patients. I was on HRT for 30 years. Oh God bless Estrogen. Stopped when diagnosed. I suffered, Three weeks radiation and on Tamoxifen for 2 months. Ive been miserable more and more depressed and sick feeling. just quit. I'll be searching this forum for older posts.

One of my questions: if HRT "fed" my estrogen positive cancer and I stopped HRT wouldnt my risk be reduced so substantially that the added tamoxifen is not as necessary as it is for a person never taking hormones.

Comments

  • moderators
    moderators Posts: 6,966

    Hi @crik, and welcome to Breastcancer.org. We're so very sorry to hear of your diagnosis, but we're really glad you've found us and decided to join the community. We're sure you'll find this place to be a wonderful source of advice, information, encouragement, and support -- we're all here for you as you navigate your care!

    We wanted to suggest you sharing your experience with Tamoxifen with your doctor/medical team. It's possible you may be able to switch to another type of hormonal therapy that might be more tolerable. You may find this podcast helpful about this topic:

    In addition, you might find this info helpful about Hormone Replacement Therapy.

    We hope this helps. Please let us know if there's anything else we can do to help.

    —The Mods

  • bennybear
    bennybear Member Posts: 244

    This is a very good question, I am wondering if you’re older and in my case had my ovaries removed how much percentage wise it is worth.
    perhaps ask your medical oncologist to go over the risks and benefits.

  • crik
    crik Member Posts: 2

    I am 73 and really want to connect with others near my age who have used HRT in the past.

  • moderators
    moderators Posts: 6,966

    @crik, you may also want to post/check out this thread: Older Than 60 Years Old With Breast Cancer

    Best,

    The Mods

  • recoveringbelle
    recoveringbelle Member Posts: 15
    edited July 21

    Hey! Recently joined here due to prelim dx w/ multicentric ILC grade 2 ER/PR positive HER- in R breast, after L mastectomy in 2006 due to extensive DCIS. Meeting w/ oncs next week and reading up on the latest debates since the 2006 era.

    I too have been on HRT—just two years—and have been tapering off myself the past few months after discovering lumps. I have severe Ehlers Danlos and the side effects of sucking estrogen out of my body sound like my disabling medical condition already. I seriously doubt I can make it.

    But, I've been plodding through the latest, fascinating research & debates, and have come to some tentative realizations that are changing my understanding. I'm going to post citations because my descriptions will be butchering the research, so please, no one take any of this as fact but just go to links yourself. What's leading me to think I need to push through a year of HT is the following:

    1) the development of a new paradigm of a parallel model of tumor cell metastasis, probably more appropriate to slower growing cancers, vs the traditional linear model, meaning tumor cells pretty much go through bloodstream to rest of body by the time your tumor is 1 mm and invasive. Tumor cells are routinely found in the bone marrow of Stage 1 patients when they search for it. It's ALREADY there, dormant, quiescent, or even senescent—they're debating the terms and model for it.

    https://link.springer.com/article/10.1007/s10555-022-10073-z

    2) certain past tx's of cancer based on this linear model have caused unintentional iatrogenic harm because they're targeted to a type of boundary-driven-growth mets, as opposed to a stronger but dormant early stage circulating tumor cell (I obviously don't understand this—but a group out of Stanford is doing a lot of cool stuff with it). This means that somehow a tx for one later "age" of mets cell, one that's mutated a lot, may unintentionally foster, encourage, or at least protect, an earlier "aged" mets cell that's been hanging out dormant for years.

    https://www.nature.com/articles/s41588-020-0628-z

    3) extending hormone therapy to 10 years is usually overtreatment, where the harms far outweigh the benefits, because HT is MOST IMPORTANT FOR THE FIRST TWO DOUBLING VOLUME CYCLES OF A CANCER AFTER YOUR DIAGNOSIS—apparently this clears out a lot of the dormant mets as well as what's left in breasts, etc. One group is even looking at recommending 1 to 1.5 years; then time off; then doing it again—but basically it looks like if you're high risk, they'd want you to consider an "interval treatment" every 5 years or so, I guess for life, to kind of "clear out" circulating tumor cells from any second primary breast cancers that might occur but not yet show up on imaging (again, I'm butchering this).

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9931789/

    I realllllllly didn't want to discover this. I've felt like my mastectomy 17 years ago was overtreatment from which my life never recovered (another story), but I've been operating on a linear model until this week.

    I very, very much don't want to do hormone therapy. Since I got the call three weeks ago, I've been assuming I'll just get a mastectomy, keep tapering off of HRT, politely take the HT script, try it for a week and then stop, and try to use as many resources from the cancer center as possible to improve my overall health as a way to stay as resilient as possible. I knew I'd refuse chemo or HT unless I've got mets—as I understood it on a linear model.

    But based on the parallel dissemination model (and the masstive data supporting it), I'm now considering that an initial phase of estrogen-reduction therapy, though it would function like chemo for me, MIGHT BE WORTH IT. I'm beginning to visualize the smallest invasive breast cancer as more like a bacteria or virus, where a little bit of it is going to be dormant if not for life, for a long while. W/ Epstein Barr or Lyme or Herpes Simplex, a few people are nearly destroyed by it, others barely notice it, and it's always there, once you have it, ready to flare given right environment. I actually had Lyme dx a year after the bite, verified on lab, and given the consequences I wish I'd gotten dx very early. The goal is get rid of the bacteria up front before it has a chance to really get in there and grow like mad.

    For me, it's starting to look like, once you've got invasive BC, you effectively DO have a type of metastatic cancer—it's not something that only grows after it goes through your lymph nodes. In fact, the lymph node positivity aren't causative but indicative—another new piece of research I didn't know. These breast cancer cells arelikely already sprinkled throughout your bloodstream and into bone marrow, dormant. The goal of HT is to kill those little cells and prevent any other lurking recurrences of that primary tumor. And apparently a dose of HT over two doubling times, which is like 80-160 days each depending on the tumor grade, or 1 to 1.5 years, can clear out most of it.

    That's why some researchers are thinking 10 straight years of HT misery isn't worth it. Basically, you should take it in the beginning to clear out the sprinkling from the first tumor and prevent local recurrences. But then, the reason to take it again is to stop more of those microscopic circulating tumors that might seep out from a second invisible primary tumor once it, too, is 1 mm big and invasive (like those that seeped out of the current one you have). Apparently, the benefit of the 1.5 yr of so of HT will last for awhile, but then after 3-5 years, these folks are saying you should have another dose of HT to "clear out" the residue from any new tumor. Now, that's if you have breasts left. I don't know what they're thinking if they're both gone—maybe that these teensy things could still be all over.

    To me, at a certain point, we all have mutated cells and risks and will end up dying of something, so it always comes back to quality of life and personal decisions about risk tolerance and prevention.

    So now, I'm more confident that I don't have to torture myself w/ lifelong HT, or even two years of it—but I'm ALSO recognizing that my plan to refuse to do any HT has been based on a flawed linear model, where I figured my choosing to do the HT was doing a "just in case" kind of thing. It appears to me now that it's highly likely that there's this crap already floating around my body—mostly in bone marrow, I guess—that could be mostly cleared out if I just soldier through for a year.

    Am I willing to feel suicidal for the next year, to not die of mets in 10-15? I dunno. I'm 57 and have challenging quality of life already due to an undertreated, invalidated, serious invisible disability. But I feel much more clear about the consequences of my decision than I was before.

    Sorry for the Joycean essay—but I've been struggling with this for the past few days, can really identify with "where you're at," and so figured here was a place to just get it out there in case this can benefit anyone else. God bless—

  • abigailj
    abigailj Member Posts: 90

    I am 65, took HRT, lowest dose if PremPro, for 11 years (menopause came pretty suddenly at 51, think the trauma of losing my mom suddenly had an effect and had horrendous hot flashes, night sweats, couldn’t sleep, etc.) until i was diagnosed. Was prescribed AI before my surgery due to delay because of Covid. Had skin/nipple sparing BMX with immediate DIEP recon, long recovery with a few complications but all good finally. Low oncotypes (6 and 11 respectively) no chemo or radiation needed. No genetic predisposition per testing. Chose not to take AIs afterwards as the 3 months I was on them were awful. Oncologist said my risk of Mets was 3% with AI and 6% without. At peace with that decision but if I was 10 years or more younger would have chosen differently.

    @recovetingbelle - appreciate you sharing the info you found in your research, definitely food for thought

  • recoveringbelle
    recoveringbelle Member Posts: 15

    Thanks abigailj.

    Sorry about your Mom. Grief can really play numbers on your body even when you're not consciously aware of it.

    I lost my Mom almost 7 years ago (I was her primary caregiver), and my older sister, then 55, actually started having periods again after almost reaching menopause. I just reached it around Christmas, at age 56.

    Your story helps me—I came back here because I had a migraine coming on and realized I'd also just cut my estrogen in half as part of my self-managed taper and that my weekend-long migraine two weeks ago also occurred after I'd cut it in half. I cannot believe the choice I'm having to face right now, on top of other non BC issues I'm facing at the moment. On the one hand, I should be grateful, to have healthcare at all, to have found it, to have a roof over my head, and the tech/comfort w/ which to post here. And I am. But on the other, it's overwhelmingly frustrating.

    So the oncologists will 1) want me to go cold turkey off of estrogen, which will lead to immediate worsening of my poorly managed existing EDS symptoms including dysautonomia-related heat intolerance, nerve, muscle & joint pain, fatigue, orthostatic intolerance, and aggravate ostepenia & well-known osteoarthritic challenges of severe EDS-H, and then

    2) start taking AI immediately, which will likely exacerbate all of the above.

    I'd cancelled several mammograms and other drs appts over the past two years because I was too tired to leave the house . . . I only pushed myself for this & the biopsies because I found new lumps.

    Assuming I have no visible mets (as opposed to all of those little things dormant in my marrow per the research I shared above), I'll probably need to choose between a serious risk of recurrence/mets in 5-10 years vs a high risk of suicidal depression w/ being bedridden 24/7. If I've already got mets, well, in a way that chooses for me . . . enjoy the time I have left and get as much palliative care as possible.

    I'll try them—maybe at half dose, once a week even? I'd love to be wrong—esp w/ some women saying they don't notice it or even feel better. But I suspect I'll end up w/ the decision you've made, and I'm so grateful to know there are others facing the same difficult life calculations.

    And, per those research articles, your taking these for three months has not gone to waste.